National LeioMyoSarcoma Foundation

helping to empower and educate about leiomyosarcoma a rare smooth tissue cancer

History

ADVANCING RESEARCH TO ACCELERATE TREATMENT OPTIONS:

The first-ever  N L M S F – SPAEN  INTERNATIONAL L M S  RESEARCH ROUNDTABLE,  launched in 2019.  65 Researchers from around the world are in support of this annual meeting initiative,  to come together –  to work together on behalf of the LMS Patient Community. Advancing precision research to design precision studies and clinical trials are the objective of the LMS Research Roundtable. The Sarcoma Patients EuroNet (SPAEN) are the Foundation’s collaborative partners for this initiative.

History and Patient Resource focus of the Foundation:

The NLMSF’s mission is to do all we can to meet the needs of Patients, Families, and Caregivers.  We have been on the front line of research collaboration since 2002; funding support of well vetted LMS specific research projects.  The Foundation has developed numerous programs to provide resources to the LMS community and invaluable partnerships with those researching this rare disease.

PATIENT/FAMILY/CAREGIVER RESOURCES:

THREE SUPPORT WEBSITES

  • Our main NLMSF web site provides a wealth of information about LMS and how to navigate diagnosis and treatment.
  • The NLMSF Research site provides information on the latest research, clinical trials, data collection programs, and more.
  • NLMSF Life Change focuses on the emotional and support side of the journey as well as life after treatment.
  • NLMSF NEWS TRACKERis a weekly newsletter providing tips, research updates, notice of events, and other LMS research news.  [I linked this to archive, but should it to go interactive page?  And with all this header changing we’ve lost  a place to subscribe.]
  • Patient – Caregiver Advocacy Network [Roundtable] –  A Foundation initiative to bring the voices of patients and caregivers together to share  experiences in diagnosis and treatment to help improve standard of care through recommendation to oncology care team consideration, and the LMS Research Roundtable enhancement of the NCCN Guidelines for standard of care, to specifically address LMS patient needs and issues. Patient/caregiver input will also be shared with the NCI MyPart Network initiative collecting natural history data.
  • LMS LIVE CONNECT is a monthly conference call for patients, family members, and caregivers to share their experience and provide support.
  • LMS SUPPORT HELPLINE 24/7 HELPLINE:   303  808-3437
  • CONNECT WITH A CLINICIAN PROGRAMprovides an opportunity to connect with research oncologists to ask general questions.
  • SIDE EFFECTS EQ is a free tool that helps you manage cancer treatment side effects and learn from experts–medical professionals, and fellow patients.